Tuesday, July 19, 2011

Reflections on Consumer Engagement in Health

I am attending the Consumers Reforming Heath Conference in Melbourne.  I commend the staff and the Board of the Health Issues Centre for their work in providing us with the opportunities to come together and reflect on some of the achievements of consumer participation in the local, national and international settings.

The last session of the day was a panel of people pondering the gains the consumer movement has made in the past decade.  The panel was chaired by Mary Draper, Chair of the Health Issues Centre.  The responses of the panel were very insightful, based on their experiences of health systems and relationships with other consumers.  There was a lovely mix of international (UK, US and Canada) perspectives as well as Chairs of national (CHF) and state based, peak consumer organisation (Qld, WA).  
I have done my best to reflect in this post what each of the speakers said but please leave a comment if you think it needs adjusting.

Jocelyn Cornwell spoke about the development of the National Service Frameworks as one of the strongest advances for consumers in the UK. The National Service frameworks and strategies set clear quality requirements for care. These are based on the best available evidence of what treatments and services work most effectively for consumers. These were influenced by patient organisations in particular those focussing on heart disease, stroke, mental health and cancer.

Jocelyn also sited the effective consumer involvement in research and in particular the work of Involve. Involve is a national advisory group which supports greater public involvement in NHS, public health and social care research. INVOLVE is funded by the National Institute for Health Research.   Anne McKenzie (HCC) has had a long standing commitment to involving consumers in research and is very supportive of Australia moving in the direction of the UK in this way, reflecting that the UK is a decade ahead of Australia in the way in which they involve consumers in research.  This is certainly a challenge for the consumer movement in the coming decade.

Susan Frampton saw the increase in access to clinical information through the internet as a gain for consumers generally.  Access to better information has the potential to better inform consumers and assist us to make more informed decisions about our health care by Susan doesn't think we have yet realised the power this provides for us as health care consumers.  The US is further ahead if Australia in terms of the public reporting of clinical and patient satisfaction data but Australia, with the myhospitals website, has certainly started on this path.  In the coming decade we will see this information used by consumers to make decisions about where we receive health care and as a tool to leverage improvements in quality of care at hospitals   

Sue Robins told a very powerful story of visiting a specialist with her son and the respect, the attention and  listening the doctor gave to them  This specialist worked in a collaborative way and showed old fashioned kindness.  In this day of everyone being "crazy busy" and with the specialisation of disease and development of technology  it is less likely consumers and our families will experience this care.  Sue referred to the fee for service model in Canada and reflected on how that does not always enable time for conversations and shares the view that many of us in Australia hold that the fee for service model can work against quality care.  I am following with great interest the development of activity based funding and quietly wondering whether it will be the saviour that some have told me it will be.

Steven Murby thought that we had achieved the tick-a-box stage of consumer engagement and that we ask more, are told more but we are not in the feedback loop of systemic improvement.

Anne McKenzie reflected on the activitist beginnings of the consumer movement and thought we had two clear successes.  The first is the establishment of the health services commissioners who can investigate consumer complaints.  There is now the acknowledgement of the right consumers have to complain.  This is one of the rights that have been preserved in the national Charter of Health Care Rights.   My view is that one of the challenges of the coming decade is to embed that right (and the other six in the charter) into practice at the bedside and in the consulting rooms. The other gain that Anne shared was the establishment and funding of consumer organisations in most of the states and territories. Tasmania and Northern Territory to not yet have such organisations.  I share Anne's view that it is these organisations that will drive meaningful engagement in the next decade.

Mark Tucker Evans built on the points of the previous speakers regarding the growth and development of consumer organisations at the state and territory level, consumer access to better information and the embedding of the charter of health rights.  Mark also reflected on his disappointment (and he is not alone in this) of the watering down of the commitment to patients cntred care which came through so clearly in the National Health and Hosptial Reform Commission's final report.  This material is available online and I think it is important that we go back to it over the coming years along with the report of the Preventative Health Task Force.

So for the next ten years the panel pointed to the following:
  • let's embrace the digital revolution and look to see how it can build relationships between consumers, with our treating teams, to increase our understanding of our health (Jocelyn)
  • let's have a different conversation based on what do we want our health for? This will empower consumers to set the agenda and engage us in our own health (Susan)
  • it would be wonderful for doctors to engage in reflective practice (Sue)
  • we need to pay attention to the politicisation of our health system by stealth and look at how the cabinet is now making decisions about approvals for the medicines listed on the PBS (Steven)
  • let's move from rhetoric to action and make sure that the people on the floor know about it and embrace consumer participation.  Let's develop action plans that bring into practice the frameworks and overarching strategies. (Anne) 
  • let's have a cross sectoral approach and make sure that aged care, disability, community care are part of the health system as well as primary care and acute services. (Mark)
Thanks to the panel for such insights, it was a very valuable session.

Darlene Cox
Executive Director

1 comment:

Melissa said...

What a fantastic article Darlene. Thank you for sharing. It sounds like a really great conference. I imagine there was so much rich experience in the room. I will share with HCQ!